Wednesday, November 25, 2015
13.
Wednesday, July 16, 2014
Two Years with Little Buddy...
{Blogging has taken a back to seat to life with four children. Funny how it happens that way. However, I feel the need to reminisce and I have too much to write on Facebook. So, here goes...}
TWO years ago today we became the forever family of this little treasure. We dubbed him our "caboose" as we waited for him to come home and The Lord walked him into our hearts in a Thomas the train t-shirt. Literally. He stole my heart the second he stepped beyond the famous polka dot curtain in Guangzhou, China and he's never looked back. Not once.
This child is funny, JOYful and definitely ALL boy. He has come SO far since that day. He's currently making up for the lost days of typical two and three year old behavior at the ripe old age of four and a half. It's ok though. That sheer determination was and continues to be the catalyst pushing him forward.
The gift of his life will never be lost on this Momma. He brings lessons of challenge and sacrifice to our family but we believe every life created is a gift from The Lord. Many say our children are "lucky" but I know that isn't true at all. WE are the "lucky" ones chosen to love them for who they are in Him. That's a gift we will never take for granted.
As I scrolled through the posts from our time in China, this one caught me by surprise. The prayer I prayed before we set out to meet our newest gift...
Grateful. Thankful. Humbled. In Awe of your plans for me. For us. For our children.
If I had known then what I know now I might've been paralyzed with fear. Scared to hop in the van with my boys to meet my new son. At times over the past two years I will admit I have been. I know fear is not from the Lord but even in those moments the Lord has sweetly reminded that He goes before us. He gives us what we need at the moment we need it. He lights our path, not from beginning to end, but at our feet right where our journey has us in that very moment. Two years later I can honestly say I meant every single word. So today, on July 16, 2014, I pray the very same prayer over our little love...
Grateful. Thankful. Humbled. In Awe of your plans for me. For us. For our children.
Thursday, October 25, 2012
My Meme...
Early this morning the greatest woman I've ever known went home to be with the Lord. My Meme was my maternal grandmother but she was so much more than just a title. She was truly one of the greatest influences in my life. Selfishly my heart is broken today but I am also celebrating her great reward in heaven. If anyone in my life deserved to hear "Well done my good and faithful servant" it was Meme.
She faithfully loved my Papa for 62 years until his passing two years ago. In today's world that is a HUGE accomplishment. They married in 1948, the day after her 18th birthday, and never looked back. She would tell you he drove her bananas at times with his opinions and crazy politics but she loved him nonetheless. She was a mother of two, grandmother of four and great-grandmother of eleven. Alzheimer's is a terrible disease that robbed my Meme of so many wonderful memories over the past twenty years. She slowly forgot the names of my babies, my husband and so many of those she loved dearly. She even forgot our oldest daughter was her namesake. It has been so difficult to watch from the sidelines as her mind slowly slipped away but I am thankful she is now whole, healed and in the presence of her Creator. I know, because of all she taught me, I will see her again.
If she taught me anything it was to love Jesus. If they cracked a window to the church building my Meme and Papa were there with bells on. During service, she always sat with Papa to her right and me to her left. She would wrap her arm around me and hold my hand while I played with her wedding ring. She talked to me often about what it meant to love God and make choices that were pleasing to Him. I had no idea at the time how those days would eventually come full circle. I'm thankful she chose to "train up a child" even when all I wanted to do was sleep in. To this day each time I sat beside her she would reach for my hand to hold. This 34 year old wife and Mother of four gladly reached back to hold the frail hand of one who has loved me so well.
My Mom and I lived with Meme and Papa from the time I was three or four until I was in 5th grade. Mom worked about an hour away so my Meme was usually the one to get me ready for the 6:10 am bus stop. I vividly remember the smell of sausage gravy and biscuits as she carried me through the kitchen to the breakfast table. Most mornings I didn't touch my food opting for an extra 10 minutes of sleep but she always got up at 5 am to cook regardless. As I got older I would tell her she didn't have to cook for me but she wouldn't hear of it. "Breakfast IS the most important meal of the day" she would always say. I had to go school with a full tummy so my "brain would be awake and ready to learn". She always regretted her lack of formal education and constantly stressed to me the importance. I never forgot.
Deep down I think she wanted me to be a singer so she encouraged me to sing at church and play piano. That was a complete and TOTAL pipe dream on her part but it took her a while to cut me some slack on that one. Her confidence in me to do ANYTHING was always genuine. However, if you've heard me sing you would have questioned her judgement on this one. It just goes to show a grandmother's love is much like a mothers. Tone deaf.
As I reflect I realize many of my memories of Meme come from her kitchen. She always saved the biscuit dough for me to play with (back when PlayDoh wasn't a household staple). She made me eat the disgusting broccoli casserole because all good girls eat their vegetables. She made the BEST chess pies on every semi-important occasion. One chess pie filling + 2 pie crusts = the skinniest chess pies known to man. My entire childhood I thought chess pies were suppose to be skinny. I didn't know it was because she knew how to stretch a dollar. She taught me to shape a perfect hamburger patty. Then she regretted the decision when I wrapped one patty of perfection in aluminum foil, placed it in the MICROWAVE for 10 minutes and went back outside to play. :) Thankfully she forgave me for almost burning down the house after a few days and a quick batch of her favorite no bake cookies as a peace offering. Even then I knew my sweet loving Meme couldn't resist a little chocolate and a good hug from her one and only granddaughter.
She wasn't fussy or pretentious. She was simply LOVE. She never made you question if you were valued or important. She told you. You never entered or left her presence without a hug and an I love you. It was simply a given. When I was six years old, I lost my half sister in a tragic accident. The last time I saw her I refused to hug her goodbye and tell her I loved her because I was mad. I'm sure it was over something silly but after she died I was so upset about my decision. I confided in my Meme about what had happened and why I was so sad. I remember where we sat, the color of the dress she wore and the way she stroked my hair as I cried. She told me she was sure that A knew I loved her. However, I should ALWAYS tell the people I care about that I love them no matter what... even if I'm mad. That one conversation has stuck with me my entire life. If you are dear to me, you'll know. I have no reservation in telling you. I am proud to say the greatest example of unconditional love I've ever known taught me that.
Yes, I am sad. How strange it was to inch up the driveway today knowing neither my Meme or Papa were at home. The house was quiet. No one smiled brightly when I walked in the door. No one asked me how I was at least 25 times or told me to enjoy my children because they will grow up fast. No one told me the story of the time me and my three cousins took a pill and got in big trouble. No one chuckled when she spoke of fly swat spankings or endless summers of mischief. No one reached for my hand today or hugged me with the long lingering hug of a grandmother.
However...
Today my Meme is no longer fragile and suffering. For that I am overjoyed. I am indescribably thankful for her life and the gifts of love she leaves behind. She was a great woman who loved God and loved others more than she loved herself. In the end there could be no greater legacy.
Sunday, September 16, 2012
Two months with Little Buddy...
Two
months ago today we met our little caboose. He walked straight into my
arms, appropriately clad in his Thomas the train shirt, and never looked
back.
-- Little Buddy
Friday, September 7, 2012
What is g6pdd?
Overview
G6PD deficiency is an X-linked inherited blood disorder in which the body doesn’t have enough of the enzyme G6PD. This means that if a boy (XY) receives an X chromosome that is deficient, he will have a significant G6PD deficiency. A girl (XX) can receive either one deficient X chromosome, or two. This means that girls can have more varied levels of G6PD deficiency, from non-symptomatic to highly deficient. Even some girls who are carriers (one good X and one bad X) have been found to be symptomatic. Some females are more highly deficient than expected, because they have one deficient X chromosome and a second mutated and/or damaged X chromosome.
- This is the most common inherited enzyme defect in the world.
- With the right precautions, a child with G6PD deficiency can lead a healthy and active life.
- G6PD deficiency is common in Guangdong, Taiwan, Guangxi and other parts of South China. It is found in the Han, Zhuang, Li and Miao ethnic groups, as well as others.
- In China many of those affected with G6PD deficiency have less than 10% enzyme activity, resulting in a high degree of sensitivity to oxidizing substances.
- Some of the G6PD variants result in chronic hemolytic anemia (CNSHA).
- G6PD deficiency is thought to be a defense against Malaria and occurs in the same regions as the Thalassemias. A person can have both Thalassemia, major or trait and G6PD deficiency.
- Tests for G6pd deficiency in boys are easily administered and reliable.
- Tests for G6pd deficiency in girls are difficult, expensive and often require genetic analysis. However in China new more reliable, less expensive tests are being developed to detect G6PD deficiency in girls.
- G6PD deficiency in women has been found to become more acute as they age.
- Those who are G6PD deficient are likely to have an increased risk of diabetes, hypertension, sepsis and its complications and cataracts.
Things to avoid
Each person, and each G6PD variant (approximately 400) can react differently to identified trigger substances. There are however, accepted lists of substances that may need to be avoided.
These include:
- NSAIDS (Asprin, Ibuprophen)
- Tylenol
- Quinolones
- Drugs metabolized through the liver or known to cause blood or liver related problems or hemolysis
- Sulfa drugs
- Petrochemically derived substances (This is a long list and gets longer every year. Many artificial foods, dyes and vitamins are included in this list.)
- Moth Balls and anything containing naphthalene.
- Methylene and Toluidine blue
- Legumes and their derivatives (for example: soy, peanut, beans, peas, licorice, food thickeners and gums, MSG)
- Other substances including blueberries, blue food coloring, tonic water/quinine, red wine, sulfites, mothballs, and petroleum derived substances.
- Illness / fever can also trigger G6PD symptoms.
Symptoms
Symptoms can be found in both those who have been diagnosed (boys and some girls) and those who have not yet been diagnosed (esp. in girls from South China / SE Asia). Symptoms generally occur within three days of exposure to triggering substance. Once the triggering substance is removed or the illness resolved, the symptoms generally improve over a period of weeks. Mild symptoms can be treated at home, more severe symptoms may require hospitalization.
- paleness (in darker-skinned children paleness is sometimes best seen in the mouth, especially on the lips or tongue)
- extreme tiredness
- rapid heartbeat
- rapid breathing or shortness of breath
- an enlarged spleen
- dark, tea-colored urine
- abdominal / back pain
- bruising
- fever
- weakness
- dizziness
- confusion
Classes of G6PD Enzyme Variants:
| Class | Level of deficiency | Enzyme activity | Prevalence |
|---|---|---|---|
I
|
Severe
|
Chronic nonspherocytic hemolytic anemia in the presence of normal erythrocyte function
|
Uncommon; occurs across populations
|
II
|
Severe
|
Less than 10 percent of normal
|
Varies; more common in Asian and Mediterranean populations
|
III
|
Moderate
|
10 to 60 percent of normal
|
10 percent of black males in the United States
|
IV
|
Mild to none
|
60 to 150 percent of normal
|
Rare
|
V
|
None
|
Greater than 150 percent of normal
|
Rare
|
Adapted from AAFP.org
Resources
• www.g6pddeficiency.org
• www.rialto.com
• www.g6pd.org
• www.ghr.nlm.nih.gov
• www.nlm.nih.gov/medlineplus/ency/article/000528.htm
• memo.cgu.edu.tw/cgmj/2809/280902.pdf
• www.hkcpath.org/docs/Topical%20Update/Topical%20Update%20V2I1.pdf
• www.aafp.org/afp/2005/1001/p1277.html
• www.bioinf.org.uk/g6pd/
• Hirono A, Fujii H, Miwa S. Identification of two novel deletion mutations in glucose-6-phosphate dehydrogenase gene causing hemolytic anemia. Blood 1995;85:1118-21.
• Mason PJ, Sonati MF, MacDonald D, et al. New glucose-6-phosphate dehydrogenase mutations associated with chronic anemia. Blood 1995;85:1377-80.
-- g6pdd
Friday, August 17, 2012
I'm sorry? Can you repeat that? g- what?
Most of you don't know the details of something I alluded to after our
orphanage visit. Little Buddy's birth note listed the phrase "Diagnosis
g6pd". I asked our guide what that meant and he said he thought it was
his airway condition. Considering I know nothing about Chinese
medicine and the fact that it ended in PD (in my nurse brain pd = Pulmonary Disorder) I accepted what he said as truth.
Unfortunately, that night I consulted Dr. Google and discovered he was
wrong. g6pdd is an acronym for a genetic disorder called Glucose-6-phosphate dehydrogenase deficiency. It is a genetic enzyme deficiency which can cause hemolytic anemic (a
blood disorder). At the time we had no idea if he truly had this condition but if
so it might explain a lot.
Fast forward...
Friday, August 3, 2012...
We had hope the birth note listing g6pdd wasn't accurate. The test had to be sent to a specialized lab so the results came back this afternoon. Unfortunately, he does, indeed, have g6pd deficiency.
According to Dr. B his level is very low so off to hematology we go. It was already on our list of consults because of other abnormal lab work but now it moves quickly up the list.
Obviously the Lord knew all of this but now we have to try to sort it
all out. In the big picture it could be worse but it would have been
nice to have this information beforehand. We gave him medication he
should not have taken (which may or may not have caused his seizures).
We gave him food and milk he can't eat or drink. WHY DID THE ORPHANAGE KEEP THIS
FROM US???? They knew the information but chose to withhold the information from us.
It is not very common here in the US but is the most common inherited enzyme deficiency worldwide. With lots of research I am finding the main change will
be the way we eat. Removing MANY foods from our diet. Limiting certain vitamins and
minerals because he can't process them. A LONG list of medications he can never ingest. All of these things
can be triggers that send him into a hemolytic crisis. We do not feel it is fair to make him eat
completely different than we do nor am I going to be his short order
cook. Thus the reason this will need to be a change for our entire
family. Quite frankly, we are OVERWHELMED but we will figure it out one day at a time.
The Chief and I? We're just sad... angry... humbled... frustrated...
overwhelmed... yet thankful. I honestly don't know where to begin. I
know once we figure it out it won't be so overwhelming but right now
that's where we are. Yes, he will live a long life as long as we are
diligent about avoiding/removing the triggers from his body. He will
require diligent eyes to keep him safe. He may
require hospitalizations and blood transfusions along the way. In the
big picture this feels like big stuff but eventually it will be small
potatoes. We know that. Yes, we are overwhelmed but we are still
thankful we said yes. We are even more thankful we said yes on those
very scary days in China. Now more than ever I know he NEEDED to get out of there and receive proper care. Now he has a Mommy and Daddy who will fight for him instead of
ignore what he needs. He didn't have that three weeks ago. I guess
we'll just become his very granola Mommy and Daddy who are nazi-ish
about everything he puts in his mouth. I guess it could be worst, right?
To those of you who found out this information via Facebook... I am SO sorry! We would have much rather you heard it from us but there's nothing we can do about it now. There are always multiple sides to every story. One you tell your inner
circle while you process an enormous life change and one you present to
the world after you figure it all out. Then there's this thing called
Facebook that can, unbeknownst to you, tell the world before you are
ready. As many of my friends in real life already know, I posted in
what I thought was a CLOSED group about something I wasn't
ready to tell the world. However, I was actually posting in an OPEN
group. 8/ So, FB decided it was OK to share my posts in the newsfeeds
of 480+ of my "closest" FB friends. Lovely...
Fast forward until today...
Friday, August 17, 2012...
Today we saw the hematologist. We are now awaiting insurance approval before we can determine Little Buddy's g6pdd variant. Once we know the variant we can learn the characteristics of how it will most likely effect him and to what severity. I honestly don't feel we know much more than we did yesterday. I asked many questions. Some she knew the answers to and some she did not. We have discovered so much discrepancy between physicians about this disorder we don't know what to believe. Over the next few weeks we will be searching for more information. Pray for discernment as we make changes for our Little Buddy. All the kids are taking it in stride...thankfully! Now Momma and Daddy need to adjust to the new normal...
-- g6pdd, Little Buddy
Thursday, August 16, 2012
One Month: August Update...
As of today we've been a family of six for one month. Things are going really well overall but so much has transpired the Chief and I are still spinning out of orbit at times. Since I am the one who documents the life and times of our family I need to write it all down. This is going to be a REALLY long update. Feel free to skip to the pictures if you get bored...
July 26, 2012...
Home Sweet Home!
July 30, 2012...
We arrived home on Thursday evening and saw Dr. B, our new pediatrician, first thing Monday morning. The
short version of our lengthy appointment was Little Buddy needed to see a
Pediatric Neurologist ASAP. We knew that was a given after the events of July 17th. Thanks to my friend K he already had an
appointment for Wednesday with Dr. S (the doctor Dr. B would have sent him to
anyway). Sometimes it is great to have connections. :) THANK YOU LORD and K!
August 1, 2012...
We saw Dr.
S on Wednesday morning. Liked him a lot.
He first started with the recommendation of medication immediately. Of
course I cringed and talked him out of it. :) I would like to
have a little more proof of a true neurological issue before we put him
on meds. He agreed, a little reluctantly, but my PCCU nurse shined
through and we came to a reasonable agreement. The current wait for an
EEG is 4-5 weeks which is the reason he wanted to start meds quickly.
The nurse came back and said, "Would you believe they had a cancellation
for Monday at 1pm?" My reply was "WHY YES I CAN! It's for Little Buddy!"
We left Dr. S office and went back to Dr. B's office for lots of lab work. The first set of labs came back that day.
The short version is his hematocrit and hemoglobin were a little on the
lower side for his age but nothing too alarming. His platelet count remains very high at nearly 800,000. His lead level was normal.
August 3, 2012...
To Be Continued...
August 6, 2012...
Monday at 1 pm we ventured to our local Children's Hospital for the EEG. Little Buddy was a little unsure at first but overall he did REALLY well. We should have the results by Thursday.
August 9, 2012...
EEG results: NORMAL!!!!
August 16, 2012...
After the first night home
Little Buddy has been sleeping pretty well thanks to a little help from
our friends Mr. Benadryl and Miss
Melatonin the first two weeks. He is still waking up in the night off and on with what we
call "the China cry". It breaks my heart every time but I know it will
get better with time. The boys switched back within a few days. It
took me about three weeks to switch back completely which contributed to
the insanity around here until we were all on the same time zone. I
thought I was going a little nutso. Thank
goodness the Ambien finally worked. Outside the medical stuff this has been our biggest challenge so I'm glad it's behind us. Jetlag STINKS! Overall everyone seems to be settling in well. Mei Mei is a little jealous but nothing out of the ordinary for welcoming a new younger sibling.
-- Little Buddy
Thursday, July 26, 2012
Some Little Boys Come by Plane...
Throughout each China adventure the one thought that never ventured far
from my mind was THIS one. The moment when we would step off the last
plane and our family would be together again. Leaving behind two
children each time for the sake of a little one who needs you, just as
much if not more, is incredibly bittersweet. THIS moment? It's indescribable joy from the second those wheels safely touch the ground.
The sign on your left says "Welcome Home! I hope you like trains!" ;)
This is the moment our sweet Mei Mei said, "Hi Jian Jian. Me ____ Yang Su". Then she hugged him... {boo to the hoo}
Meeting grandparents...
and special friends...
So what are we waiting on? Where is this place we call HOME??
Excuse me... What is this apparatus and why have you strapped me in?
{photos captured by our dear friend Sara who has been photographing our family since Mei Mei joined our crew. Since I blog anonymously I can't link her here. If you are local and need a FANTASTIC photographer with an AMAZING HEART email me. I am happy to share her.}

































































